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» LymeNet Flash » Questions and Discussion » Medical Questions » WE NEED ALL OF YOU ON DEC 18 IN HARTFORD, CT (Page 1)

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Author Topic: WE NEED ALL OF YOU ON DEC 18 IN HARTFORD, CT
Lymeblue
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We MUST be there,we can't afford losing another LLMD....PLEASE COME TO THE HEARING

Show to the Medical Board of CT that we are hundreds of people aware of Dr J case.

It is in our hands to send them a sign.

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Lymetoo
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[bow] Someone please go in my place!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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djf2005
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can we have some more details?

is there any way to assist w/o going?

i dont think i could make the drive right now, but id like to support somehow..(other then financially.. [Smile]

this is frightening....how many more will go?

[Frown]
[bonk]

--------------------
"Experience is not what happens to you; it is what you do with what happens to you."

[email protected]

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sometimesdilly
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"Is there any way to assist Dr. Jones without going?"

YES.

Dr. Jones recently requested financial donations so that he can continue his legal defense. The medical board's pursuit of Dr. Jones will last well beyond the December 18th hearing.

I have asked all my friends and family to not buy me anything for Christmas this year, but to instead donate whatever they can directly to Dr. Jones' legal defense fund.

Despite the significant penalties for doing so, my husband and I also decided to withdraw all the funds I had in the 403k savings plan from my last job, and we are donating half of that money to Dr. Jones.

We are falling deeper and deeper into debt and could use every penny to help us begin to dig out. For us, though, this decision couldn't have been any simpler.

Nothing else matters more right now than having our son get better, and we firmly believe he doesn't have a chance at that without Dr. Jones.

We are also positive that if the players not very far behind the scenes are successful in driving Dr. Jones out of practice, a host of our LLMD's will quickly come under a major, sustained assault.

The quickest, surest, least expensive and most effective way to "cure' the problem of late/chronic Lyme is to get rid of the few doctors who will diagnose and treat it.

If Dr. Jones falls, even with his national recognition and reputation and the down right devotion he has inspired in so many, do you really believe YOUR LLMD could survive a similiar assault?

Helping Dr. Jones right now is ESSENTIAL for all of us, my fellow Lymenetters. Please do what you can to help him.

dilly

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Lymeblue
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Can somebody help me getting there....
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Robin123
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What about the possibility for those of us who can't be there to call in that day to some phone number(s) for the panel and express our support?
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lymeout
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What about an ad in the local paper that would run the day before? We could all chip in.
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merrygirl
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Lymeout I like your Idea.

Melissa

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CaliforniaLyme
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Hey- if anyone has frequent flyer miles they have never used and don't want donate them to Derek or to LymeToo so they can be there!! Just an idea!!! (If I win the lottery I would pay for us all)(and a newspaper ad too!!!)

Wish I could be there too- please anyone who can, pleeease go!!!!!!!!!!!!!!!!!!!!!!!!!!!

Sincerely,
Sarah

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

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sometimesdilly
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the newspaper ad is a great idea- i am waiting for a call back from the Courant to find out how expensive a full or half page ad would be if run on Sat dec 16 or on sun dec 17th.

calling the board's offices that day also seems a fabulous idea, because there is NO reason why every single one of us can't do that much for Dr. Jones.

I'll be happy to find and post that number- i'm going to call dr. J's office first to make sure that making those calls aren't counterproductive somehow.

Also, we have an appt with dr jones on december 10th, and i will ask him then what else might be helpful for us to do in the immediate and short term.


dilly

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FightFireWithWater
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I'm thinking that the time is here to stand up for Dr. Jones and that any consequences for my personal life are secondary.

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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cjnelson
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Full page ad would be great idea!!

--------------------
Seeking renewed health & vitality.
---------------------------------
Do not take anything I say as medical advice - I am NOT a dr!

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sometimesdilly
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called dr. jones' office, and then his atty's. am waiting to hear back from the latter.

they'd appreciate that these ideas are vetted to ensure that we don't accidentally and with the best of intentions do anything that will harm dr. j.

i'll relay whatever i hear as soon as i hear it.

fighter- well said- and so succintly!!

dilly

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Tincup
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You guys are beautiful...

The children will smile.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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jennyflyer
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I may be able to drive up there that day, it would be about a 2.5 hour drive for me.

I do have many frequent flier miles that I would be happy to donate. I used to travel a lot for work, haven't so much over the past year because of not feeling well.

It would be good to have one of our well-versed Lymies there. [Smile]

--------------------
Jennifer

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Lymetoo
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Jenny, that's a great idea! I wouldn't be able to take advantage of that myself, but I hope someone "well-versed" could.

My sinus infection is consuming all my time and I know I can't go. I will be undergoing some addtional treatments over the next 3 wks as well.

How kind of you to offer your miles!! [group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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jennyflyer
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I'm sorry to hear that, I hope you get some relief soon. I think I may have one too, can't shake it.

Well, anyone else just let me know.

--------------------
Jennifer

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Badtick
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I can go but I can't get up there until about 2:00. Think I would have a problem getting in if I'm late?
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sometimesdilly
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was told that letters to the Board would be OK, calls not.

please see separate thread with the correct address- am trying to centralize info related to writing letters in one thread-

dilly

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hcconn22
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Lymeblue desparately wants to go; can you connect with her on FF miles? That is so generous.

She knows her second home and Fred are waiting for her here in CT!!!

Blake

--------------------
Positive 10 bands WB IGG & IGM
+ Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest

And still positive ELISA and WB two years after IV treatment
http://www.lymefriends.org/profile/blake

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ellenluba
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The following post is from Eva at the Empire State LDA. Please distribute.

URGENT!! PLEASE DISTRIBUTE!! !

December 18, 2007 at 1:30 p.m., at the Legislative Office Building, Capitol Avenue, Hartford, CT, in Conference Room 2C.

Fellow Lyme patients and advocates!

Dr. Jones' "Decision" Hearing: We all need to be in Connecticut on December 18!

Support of Dr. Jones translates to support of OURSELVES!

At his age, Dr. Jones could have retired with his medical license intact, but his vision was to defend and prove the protocol that helps so many. Dr. Jones went through these hearings to validate our side!!!!

He's an original, developing knowledge of tick-borne diseases most importantly in these areas:

a.. that standard Lyme tests are often negative, but when a patient exhibits clinical signs, these can be assessed to diagnose Lyme and other co-infections
b.. his successful case-histories have proven that long-term treatment, when necessary, is a viable standard of care
What is most urgent about this situation is captured in the following statement from Dr. Jones:

"the proposed decision states that I have been charged with failing to reconsider my diagnosis of Lyme disease in light of the negative Western Blot tests in April, 2005."

You see if they go forward with this - they are essentially saying that there is no such thing as a "clinical diagnosis" of Lyme. If this panel of the Connecticut State Medical Board is allowed to perpetuate these statements in Dr. Jones' decision, we all are in trouble. -

On December 18, the panel judging Dr. Jones will make its recommendations to the entire board and Dr. Jones' rebuttal will be made. Then the entire board will decide to accept or deny the panel's recommendation. Our attendance will help to show them that, thanks to Dr. Jones, tens of thousands have been saved. We hope that the board will take notice, consider the value of Dr. Jones' medicine and find for him, against the panel's recommendations. At the very least, it is important for us to be there as a statement of our own rebuttal of the panel's poor judgment. And the media will want to hear from us, even if the panel does not!

Eva

See below: letter from Dr. Jones *** See underlined - patients, doctors - all will be affected!!!

CHARLES RAY JONES, M.D.

Madison Towers

111 Park Street, 1st Floor

New Haven, Connecticut 06511

Tel (203) 772-1123 Fax (203) 772-0682

December 5, 2007

Dear Friends,

I have appreciated the many expressions of support being conveyed to me by so many of you, and want to keep you apprised of the latest developments regarding the charges brought against me by the Connecticut Department of Public Health.

Almost as soon as I had issued my previous update to you, the hearing panel assigned to my case released its "Proposed Memorandum of Decision." This decision, which is preliminary, recommends that many of the charges against me be upheld and outlines the following sanctions: a reprimand from the Connecticut Medical Examining Board, a total civil penalty in the amount of $10,000, and a two-year supervised probationary period, to be conducted by a physician who will review my patient records at my expense. My license, however, was neither suspended nor revoked, nor was it recommended that it should be.

I want you to understand the potential impact of these recommendations, if they are allowed to stand. For example, the proposed decision states that I have been charged with failing to reconsider my diagnosis of Lyme disease in light of the negative Western Blot tests in April, 2005. It also states that I have been charged with diagnosing a disease in very low risk patients, with non-specific medical histories, non-specific signs and symptoms, and negative laboratory tests. Bear in mind that the record indicates that these patients had traveled to other states, had camped in Oklahoma, and had a history of tick attachments. A panel of the Connecticut Medical Examining Board has determined that the Connecticut Department of Public Health has sustained its burden of proof with regard to these charges, meaning that I am guilty as charged.

As you can see, these recommendations fail to take into account the unreliability of laboratory testing for Lyme disease. If they are not overturned, they will seriously impede my freedom to diagnose and treat Lyme and other tick-borne diseases based on my clinical judgment and expertise, despite the fact that I will be allowed to retain my medical license. Furthermore, these findings will set a dangerous precedent for other physicians treating Lyme disease. That is why we must prevail and, if we are unable to reverse these recommended findings, continue to oppose them in court. ***

The full board will consider the hearing panel's recommendations and proposed penalties at a formal hearing scheduled for December 18, 2007 at 1:30 p.m., at the Legislative Office Building, Capitol Avenue, Hartford, CT, in Conference Room 2C. Written responses, or legal briefs, must be submitted before December 13. At the hearing, both sides will present oral arguments. My legal team will challenge the preliminary findings and the proposed sanctions. It is possible to see movement from a panel's "Proposed Memorandum of Decision" to an approved final decision, after the full board hears the oral arguments and reads the briefs.

I extend a warm and hearty welcome and encourage your attendance at this hearing. It is important to convey to the full board that this is a matter of considerable importance to the surrounding community. They have reserved a big conference room for this purpose, indicating that they are anticipating a very large turnout. We wouldn't want to disappoint them! Please bear in mind, however, that this will be our first public encounter with the full medical board. It is critical that we do not distract them, or disrupt the proceedings in any way. The press also is likely to show strong interest in these proceedings, and it will be important for them, as well as the members of the board, to see the Lyme community for what it is: responsible, dignified and appropriately involved.

Once again, I want to emphasize that your caring and concern during this process has been invaluable to me. As you know, your financial support has been essential as well, and your generosity has touched me deeply. I hope that you will continue to make donations, to the extent that you are able, to the Charles Ray Jones, M.D. Legal Defense Fund (http://www.lymesite .com/drjones. htm).

I send very best wishes for a healthy and happy holiday season.

Sincerely,

Dr. Jones

Charles Ray Jones, M.D.

See below about tests:

Johns Hopkins October 2005:

Johns Hopkins released the results of a two year study indicating blood tests missed 75 percent of the people with Lyme. Hopkin's latest results confirmed what the International Lyme and Associated Disease Society (ILADS) has been stating for years- "up to 90 percent" of people with Lyme were being missed using the standard testing methods.

The recently released study admits the sensitivity required for Lyme testing is still "not obtainable", causing a potential nightmare for those who were told they didn't have Lyme due to a negative test and therefore, were denied treatment for a serious and potentially chronic infectious disease.

The study determined skin biopsies of the rash and cultures can be inconclusive. In addition, waiting for results, which may take a month or more, may delay necessary treatment. Without prompt and adequate treatment, the Lyme infection can become more entrenched and more difficult and costly to treat. Testing spinal fluid, an invasive procedure with risks to the patient, has also been determined to be of little diagnostic value.

According to Hopkin's, months after becoming infected, untreated patients can develop chronic major manifestations and can experience serious neurologic, cardiovascular, or musculoskeletal disorders.

Blood and tissue specimens for the Hopkin's study were collected from 86 Maryland and Pennsylvania residents who were evaluated at the Johns Hopkins Medical Institutions in 2001 and 2002. The results were not published until October, 2005.

For more information, for this article in full, and for the actual John Hopkins study, please email!

Eva Haughie,
Pres. Empire State Lyme Disease Association, Inc
http://www.empirest atelymediseaseas sociation. org/


__._,_.___

--------------------


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dontlikeliver
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I would so love to be able to attend another hearing, especially this crucial one, but I do not have enough airmiles for a London-NY-London ticket, nor do I have the money to pay for the plane tickets.

So, as it's unethical and against board rules to ask for money -- I'm asking if there is anyone with a LOT of airmiles who can spare about 60,000 air miles (which I think most airlines require now for a transatlantic ticket), then I would be there 'on behalf of England'.

My daughter and I went to one of the previous hearings together and although she's not being treated for Lyme she was really pleased to meet Dr Jones and thought he was a 'big teddy bear'.

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jennyflyer
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I have enough Continental miles to get you there and back. Let me know if you want to come and I will gladly make the arrangements for you.

--------------------
Jennifer

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Lymeblue
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THAT WOULD BE GREAT DDL REPRESENTING UNITED KINGDOM !!!!!!

BLAKE THANKS !!!

ALL FOR DR JONES......

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dontlikeliver
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Jennyflyer,

Are you talking to MEEEE?? [Smile]

I am not sure if you're directing that to me, but I will PM you anyway.

DLL

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FightFireWithWater
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My understanding is that December 13 is the cut-off date for letters to arrive in support of Dr. J. Can someone confirm that, please?

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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sometimesdilly
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fire-

i did not hear that cut-off date when i spoke directly to dr. j's atty's office and that of dr. j.

common sense says that since the 18th is monday, mail received that late or by sat the 16th might well be too late, because it will take awhile for letters to make their way through the internal mail delivery system.

so, with an exact cut-off date or not, it certainly makes sense to have them sent as soon as possible!!

dilly

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Lymeblue
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I do have transportation once in NY, CT....just need the plane fair....or a body that would replace me at the hearing....
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jennyflyer
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Sorry for the confusion, I was actually directing my message at both you DLL and Lymeblue. [Smile] I've pm'd both of you so hopefully we can speak sometime this weekend.

Jennifer

--------------------
Jennifer

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Lymeblue
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Jenny Ill call you...up for more comments.!!
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Tracy9
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Lymeblue,
We can pick you up in Hartford and we can all go together to Dr Jones hearing, so you don't have to rent a car or anything.

Of course we'll be stopping at the grocery store on the way home!!!

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Robin123
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That's fascinating that DDL could fly in from England! People everywhere are interested in this case. What about visuals? Holding banners and signs from states and countries in support?
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bettyg
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jennifer, god bless you; you are a SPECIAL ANGEL FROM HEAVEN for offering to donate all those frequent flyer miles to both England's don'tlikeliver and trueblue!! [group hug] [kiss]


what a refreshing, positive post!!

robin, i do like your idea of signs showing different states and ENGLAND shown of those attending!

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dontlikeliver
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up
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Lymeblue
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Tracy, thanks I'll let you know if I'm all set to be there...

here more information



PLEASE share, Thank you.

Portal: http://lymesite.com/drjones.htm

Time, Date & Directions: http://lymesite.com/Dr_Jones_hearing_dates_directions.htm

Travel: Rides available & needed, free rooms and hotel info: http://lymesite.com/Dr_Jones_buses.htm

Letter writing campaign details and updates: http://lymesite.com/Jones_updates.htm

Letters from the good Doctor: http://lymesite.com/drjones.htm

DONATION info: http://lymesite.com/Dr-Jones_please_send_a_contribution_to_th.htm

Synopses of all hearings & letters from Sandy: http://lymesite.com/hearing_1_synopsis_by_sandy_bere.htm

Reasons to support Dr. Jones: http://lymesite.com/Dr%20Jones%20why%20give%20support.htm

Misconceptions: http://lymesite.com/MISCONCEPTIONS_JONES.htm

Fundraisers: http://lymesite.com/LLMD_FUNDRAISER.htm

Advocacy: http://www.lymeinfo.net/advocacy.html

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kay mass
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Links to information regarding Dr. Jones
PLEASE share, Thank you.

Portal: http://lymesite.com/drjones.htm

Time, Date & Directions: http://lymesite.com/Dr_Jones_hearing_dates_directions.htm

Travel: Rides available & needed, free rooms and hotel info: http://lymesite.com/Dr_Jones_buses.htm

Letter writing campaign details and updates: http://lymesite.com/Jones_updates.htm

Letters from the good Doctor: http://lymesite.com/drjones.htm

DONATION info: http://lymesite.com/Dr-Jones_please_send_a_contribution_to_th.htm

Synopses of all hearings & letters from Sandy: http://lymesite.com/hearing_1_synopsis_by_sandy_bere.htm

Reasons to support Dr. Jones: http://lymesite.com/Dr%20Jones%20why%20give%20support.htm

Misconceptions: http://lymesite.com/MISCONCEPTIONS_JONES.htm

Fundraisers: http://lymesite.com/LLMD_FUNDRAISER.htm

Advocacy: http://www.lymeinfo.net/advocacy.html

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Lymeblue
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Tracy, I forgot, If I make it there, definitely we need to stop at the supermarket.....!!!
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merrygirl
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I was thinking maybe people should hold 8x10 Photos of Kids that Dr J has helped.

To actually see the faces of all the sick angels he has saved........


Melissa

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Lymeblue
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More informatin on how to help,please distribute:


1.Addresses for letters to the Connecticut Medical Examining Board:



It has been suggested that emails, rather than snail mail letters, may get through more quickly, given security measures in place. Letters to the Board should be positive in tone, not inflammatory or accusatory. Express your support for Dr. Jones. State what he has done to help you or someone that you know? How has he contributed to the well-being of patients? What will be the consequences to the community if he is not available to practice and train others?



Here is the snail mail address:



Dr. Dennis G. O'Neill, Chairman, CT Medical Examining Board
410 Capitol Avenue, MS #13 PHO
P. O. Box 340308
Hartford, CT 06134-0308



2. To send letters to CT Governor Rell:



Again, letters should be positive in tone, speaking of Dr. Jones' considerable value and contributions to the community, lives he has helped and saved, rather than inflammatory or accusatory. In the case of letters to the governor, it might be ok to note concern over the process, to the extent that it has seemed unfair and unreasonable, asking her to investigate the behavior and motivation of the DPH, if you feel that this should be done.



Governor Jodi Rell
Office of the Governor
State Capitol
210 Capitol Avenue
Hartford, Connecticut
06106



3. Please copy Dr. Jones' attorneys on letters to the CT Medical Board and to Governor Rell:



Elliott Pollack, Esquire

Christine Collyer, Esquire

PULLMAN & COMLEY, LLC
ATTORNEYS AT LAW
90 State House Square
Hartford, CT 06103-3702

4. To send letters to the Hartford Courant:

Hartford Courant: http://www.courant.com/about/hc-contactus,0,6309677.story

OPINION/LETTERS TO THE EDITOR The Courant welcomes letters on matters of public interest. To send a letter, use this link. http://www.courant.com/news/opinion/letters/thc-letters,0,1754910.customform

To contact the opinion staff click here. http://www.courant.com/about/custom/thc/thc-editorial,0,3864587.htmlstory

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Lymeblue
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more :


NOTE: The CT Medical Board is expected to hand down its decision at this
hearing.

Letters to the Hartford Courant can be emailed to [email protected]
com or by using the Courant's online form via
http://tinyurl. com/2kasmf. They have a word
limit of 200 words.
Letters to Gov. Rell can be emailed to [email protected]
ct.gov
Faxed to 860-524-7396 or
mailed to

Office of the Governor State Capitol 210 Capitol Avenue Hartford, CT 06106

You can also go to the CT govt website via http://tinyurl.
com/2fx84o to express your opinion about various
subjects, including healthcare, by filling out a form.

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Lymeblue
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up
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Tracy9
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IF they are going to hand down their decision that day it seems safe to assume the decision will be made and set in stone prior to December 18.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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lymednva
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Dr. Jones said:

quote:
Bear in mind that the record indicates that these patients had traveled to other states, had camped in Oklahoma, and had a history of tick attachments.
Gee, I used to camp in OK and had a history of tick attachments when I grew up in that state! I've also traced my symptoms back to sometime in my childhood.

Tracy9 that's a good point.

I'm trying to decide if I can afford to take the train to NYC and stay with my son and DIL.

Of course I would still need to get to Hartford. Not certain how long that takes.

I can't walk long distances yet, but manage to walk several blocks at a time whenever I'm in NYC.

Mulling things over in my mind.

--------------------
Lymednva

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ellenluba
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Hi,
I missed that about their handing out the decision that day. I didn't think they ever did that. But if you saw it someplace , could you let me know.

You guys are fantastic in helping each other out to get there. Jenifer giving those airmiles is wonderful.

I think that visuals are out, unfortunately.

Check out the part in Dr. Jones' letter that said we need to be quiet observers. I think I will choke trying to be that, but I do know it will be the most effective strategy.

If anybody thinks this isn't important, remember that in 2001, Dr. H and Dr. B in NYS were both charged with medical misconduct. Two of the legislators who believed in us pushed the head of the Assembly Health Committee to hold hearings on Lyme disease.

He was not happy about this.

But, you could see the expression on his face change when almost 500 quiet, serious looking patients filed into the auditorium where he had expected a handful of whackos.

The visual that turned him around was the visual of many, many, serious, earnest citizens showing up to be counted.

Mind you, I'm all for signs and noise etc, but not in this venue

Ellen

--------------------


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ellenluba
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Anything anyone can do he hearing would be appreciated.

There will be hundreds of seats that we need to fill to show how important Dr Jones is.

I just got upsetting news that one activist around here just called her list of people and so far no one is going. So please think of whatever you can do to spread the word.
Ellen

--------------------


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sometimesdilly
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I saw Dr. Jones yesterday.

He needs many of us to come on the 18th.

I know it would be a very long day, but what i'd like to do is drive up the morning of the 18th and come straight back after the hearing.

Four people can fit in my car, and I'd be happy to pay for all gas and tolls.

Any volunteers for an all expense paid day to CT and back to help Dr. Jones? I'll be leaving from Baltimore and can folks up form the train station there or from park and rides anywhere going up north.

I will need help driving- i cannot drive there and back safely on my own, but can do a great deal of the driving if another or others can co-pilot.

please let me know ASAP.

dilly

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merrygirl
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jennyflyer
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Good news and bad news: I will be there and I've made arrangements to get Lymeblue there, but sadly I wasn't able to use my miles to get Dontlikeliver here.

I guess because it's so close to Christmas the airlines are charging twice as many miles as usual.

--------------------
Jennifer

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Lymeblue
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When I said Jennyflyer called my daughter told me that it sounded like a miniture lady flopping wings was on the other side....flying while talking over the phone,,,funny!
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Monica922
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What about some kind of online petition of support for Dr. Jones like Ann has done for Congress?
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Tincup
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Fiddle.

Forgot what I wanted to say.

Too many cookies I guess.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tracy9
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Not sure if this will help anyone, but I can transport 2-3 people from Ashford, CT..which is near UConn in Storrs, Vernon, Manchester, and very close to Sturbridge and ;I-84.

Even if you are coming from Mass, NH, or Maine and want to carpool from Sturbridge area, I'm only 15 minutes from there on 84, and can carpool for the last half hour.

I am also able to put up at least two people at my home if anyone is interested.

I am planning to be there on the 18th!!!!

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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bettyg
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quote:
Originally posted by Monica922:

What about some kind of online petition of support for Dr. Jones like Ann has done for Congress?

hi monica,

since you are new, ann is an outstanding supporter of the petition that LYNNE created last year before the LDA created theirs! just setting the record straight. [Wink]

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Monica922
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Thanks Betty. I was just trying to think of something I can do to help from home since I cannot drive there yet [Smile]
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dontlikeliver
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Someone please go in my place.

Jennifer very generously offered me her miles to fly over from the UK, but typically the airline wanted double the amount of miles normally required due to it being near Christmas, so I won't be able to make it after all.


DLL

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merrygirl
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Is there an email for the medial board??

I can't find it or I am staring right at it!

I am trying to go on the 18th

Thanks, Melissa

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map1131
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I'm saving money for next year trip to support the cause. No doubt there will be another fight for what's real and right when it comes to lyme & company. Oh, how I wish I could be there for this presentation and fighting this battle.

I've never felt the need to give to Dr J. and his battle until today. All I can do at this point is a little money for his fight.

Lots of prayers for the doc and all of you going.

Pam

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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Tracy9
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Can those of us who are going plan to meet up somewhere? I will bring name tags!!!

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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jennyflyer
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Please, anyone who wants to go just let me know how I can help, I'll do whatever I can.

I'll be driving up to Hartford from northern NJ (by Paramus) after work on the evening of the 17th.

--------------------
Jennifer

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luvdogs
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I'm going from RI - will be going by bus I guess. I can't drive the highways, otherwise I would offer a ride [Frown]

See you there!

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merrygirl
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luvdogs-

I will have to drive through RI so I could potentially pick you up-

I just have to see if hubby can get the day off 50/50 % chance.

I am not offended if you would rather not...I know you don't really know me!!

Melissa

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bettyg
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quote:
Originally posted by merrygirl:
luvdogs-

I will have to drive through RI so I could potentially pick you up-

I am not offended if you would rather not...I know you don't really know me!!]

melissa, sorry, but i have to comment here as usual! [Wink] [lol]

what an OPPORTUNITY for 2 lyme patients to get to know each other, speak about the LYME CAUSES, and think of different ways they can be effective and more in their own states and nationwide!

now, i will butt out, and forgive me, but i wished i lived closer and could car pool with one of you. BOY WOULD WE HAVE A LYME CONVERSATION!! [Wink] [lol]

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map1131
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betty, maybe we can organize a lyme bus sometime next year to come around and pick us up and take a lyme conference trip? lol It will probably be years before there is anything in the mid-west closer for us to attend. Since we all know that we don't have lyme in KY or Iowa?

Anyone familiar with the Harry Potter movie where the two decker bus comes racing down the street and picks him up?

There were some crazies on that bus. Not like us?

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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luvdogs
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Melissa,

That would be great! There is a chance I will be getting a ride with a friend, but it doesn't look promising. If it is a nuisance for you, I am fine with taking the bus. Otherwise that would be fun!

You can PM me if you'de like. I live right off of the highway (195)... I am psyched! Thank you so much and I can pay for gas! Let me know when you know about your hubby. Thank you so much!!! I will PM this to you also...

Sara

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merrygirl
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I should know tomorrow!I will Pm you with more info, It would be great to meet!


Betty- wish we could come get you too!!

If we ever get a Lyme bus, it has to totally be a big green bus!! [lol]

Talk to you soon!
Melissa

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FightFireWithWater
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Good news. The weather forecast is "Sunny" (no snow) for the 18th.

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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sometimesdilly
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sorry to say i never heard from any fellow marylanders willing and able to make the trip by car.

i had to go ahead and make train reservations- amtrak ups the ticket price if purchased fewer than 3 days out, so reluctantly, i have to withdraw my offer to drive folks to CT.

I'm looking forward to meeting as many Lymenetters as possible up there!

dilly

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FightFireWithWater
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That is disappointing, Dilly! Wonder what is up with Marylanders?

While there is a storm in the northeast presently (even the Governor of CT got stuck temporarily in traffic apparently) and there may be more precipitation on Sunday, no snow is forecast for Monday the 17th or Tuesday the 18th.

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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FightFireWithWater
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Who's going?

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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Lymeblue
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OK PEOPLE GOT A 3RD REASON TO GO ON DEC18

If you're concerned about Lyme disease care...



Your Participation is Crucial -

Your Access to Care is in Jeopardy!



Tuesday, December 18, 2007



3 events, same day, same building..

Join patients, advocates, doctors & legislators.

Numbers count!



Our Lyme doctors are being discredited and brought up on charges;
O ur coverage is being denied;
We are losing the ability to be treated with effective protocols.
This is our chance to DEMAND access to quality care!


1. Join Legislators & Media for FREE breakfast

9 am to 10 am

Private Dining Room - 1st Floor / Connecticut Legislative Office Building in Hartford

Call your state legislators at www.congress.org and make sure they are coming.



Speakers:

Representative Jason Bartlett - 2nd Assembly District for the State of CT



Daniel Cameron, MD, President

International Lyme & Associated Diseases Society (ILADS)



Patricia Smith, President

Lyme Disease Association, an all volunteer national patient advocacy organization



Sandy Berenbaum, LCSW, BCD



2. Lyme Disease Prevention Informational Forum

10 am to 12pm

Room 1-D / Connecticut Legislative Office Building in Hartford



Matthew Cartter, Durland Fish & others will speak at this forum.



No Lyme patient advocacy representatives have been invited to the forum, but there will be an Animal Rights activist speaking. Who will speak for our children? We consider this a blatant dismissal of the concerns of patients who may have a differing opinion.



3. MAIN EVENT: Dr. Jones Hearing - Medical Board Proposed Memorandum of Decision

1:30pm

Conference Room 2c / Connecticut Legislative Office Building in Hartford , CT

The room seats 200. We need to fill them.



The hearing is scheduled to review the preliminary findings of the panel charged with overseeing this case. It is very important we demonstrate to the Medical Board, through our respectful attendance, the importance of this courageous physician to the care of our children nationwide. This is the first time the entire board will have the opportunity to see the patients & advocates. A large turnout is ESSENTIAL!



For those interested in attending any of the above events or for more information contact [email protected] and so you can be notified in case of last minute cancellation.

For travel, ridesharing & all other info regarding Dr. Jones hearing visit www.lymesite.com/drjones.htm

Stay tuned for information on letter writing campaign.


Directions & Parking Info

From I-84 Eastbound
Take Exit 48, Capitol Ave (stay in right lane of exit). Go right at end of exit ramp onto Capitol Ave. and proceed past the Legislative Office Building which will be on your right. Immediately past the building, take first right and proceed past both the building and the parking garage beyond it. Continue all the way to the back of the garage to enter for parking. There is a covered walk way from the top level of the garage to the third floor of the Legislative Office Building .

From I-84 Westbound
Take Exit 48, Asylum St. Go right at the light at the end of the exit, then bear immediately left onto the start of Farmington Ave. Go a very short distance on Farmington Ave. to the next light (YWCA is on the corner), and turn left onto Broad St . Go through one stoplight, and past the State Armory building which will be on your left. Immediately past the State Armory building, turn left into the Legislative Office Building access road, and then take your next left. You will be heading toward the Legislative Office Building parking garage. Continue all the way to the back of the garage to enter for parking. There is a covered walk way from the top level of the garage to the third floor of the Legislative Office Building .

From I-91 North or South
Take Exit 29A, Capitol Area exit, and proceed along the exit 29A connector. You will come to a traffic circle at the end of this long connector road. Proceed around the traffic circle, and turn right from the circle onto Elm St. Follow Elm St. to the end, (you will see the State Capitol Building in front of you). At the stop light at the end of Elm St. , go left onto Trinity St. , then go right at the next light onto Capitol Ave. The State Capitol Building will be on your right. Proceed along Capitol Ave. , going past the Capitol Building , and past the entrance to I-84. You will also go past the Legislative Office Building which will be on your right. Turn right into the entrance immediately after the Legislative Office Building , and proceed past both the building and the parking garage beyond it. Continue all the way to the back of the garage to enter for parking. There is a covered walk way from the top level of the garage to the third floor of the Legislative Office Building .

From West Hartford, Route 44
Take Asylum Ave. (Route 44) from North Main St. in West Hartford . Proceed along Asylum Ave. (Route 44) heading toward Hartford until you get to the Broad St. intersection (The Hartford Insurance Group headquarters building will be on your left). Turn right onto Broad St. and proceed past the State Armory building on your left. Immediately past the State Armory building, turn left into the Legislative Office Building access road, and then take your next left, heading toward the Legislative Office Building parking garage. Continue all the way to the back of the garage to enter for parking. There is a covered walk way from the top level of the garage to the third floor of the Legislative Office Building .

Parking Info:
Parking at the Legislative Office Building (LOB) is limited. Please allow extra time to park.

Limited free public parking is available on level one of the Legislative Office Building parking garage;
Across the street from the Legislative Office Building (across Capitol Ave. ) is Hungerford Street . There is on-street parking in this entire neighborhood, free of charge;
On Oak Street (diagonally across to the left from the Legislative Office Building ) off of Capitol Ave. , there is a public parking garage in the CT Education Association Building (CEA building - across from the Connecticut Supreme Court Library). This garage costs money, but can save you time and aggravation;
There is also parking available on the street next to the CEA parking garage.

Posts: 983 | From The sky | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
hatsnscarfs
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I'm driving from Boston and can take several passengers. Let me know if I can pick you up anywhere between Boston & Hartford.
hats

I'll bring Lyme Green Ribbons

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Tracy9
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I might take you up on that; I'm right on the way, and had offered to drive others; but we could carpool. That would make it easier all around perhaps!

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
FightFireWithWater
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To read some of the remarkable letters that are being sent in support of Dr. Jones, please see Tincup's *Thursday Party* thread.

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

Posts: 1265 | From does not list | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
sometimesdilly
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many of my fellow marylanders have been very involved and busy doing Lyme-related work that has made a big difference -

including a (successful!!) in-person trek to our US senators' offices in DC to lobby for a federal Lyme bill.

For many reasons it is a difficult time of the year to travel so far, and i don't blame my fellow Marylanders for not being able to make the trip.

I SURE DO HOPE, THOUGH, THAT EVERYONE JOINS TINCUP AND LOU AND MYSELF IN SENDING A LETTER TO THE BOARD ET AL.

Yes, there will be many more Lyme battles in the years ahead, but this is one of those handful of times when it is absolutely crucial to stand up and be counted.

dilly

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Tracy9
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Dilly or Lymeblue,
Roadrunner needs a ride from New Haven; which I think you both may be passing through? Maybe actually you should connect in NY and ride together!

If anyone can give Roadrunner a ride; please PM him! Thanks!

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
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